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In his distinguished career, surgeon, writer and researcher Atul Gawande has examined everything from Ebola to solitary confinement in American prisons. His latest book, Being Mortal, takes a look at how humans confront death. Read more about what he said at the Sydney Writers’ Festival in a feature article.

Transcript

Norman Swan: Hello and welcome to the Health Report with me, Norman Swan.

Atul Gawande is a Harvard surgeon, a writer for the New Yorker, best-selling author and a health system reformer trying to make healthcare safer and more affordable. He was in Australia a few weeks ago for the Sydney Writers' Festival, in part to talk about his latest book, Being Mortal, which is about how we face the last years of our lives and how, he argues, medicine and indeed the aged care industry are often serving those of us at the end of our lives pretty poorly.

I interviewed Atul Gawande in front of a sell-out audience at the Sydney Opera House.

Well Atul, welcome to Sydney.

Atul Gawande: Thank you.

Norman Swan: First time I take it?

Atul Gawande: First time.

Norman Swan: Talk to me about courage. You talk about courage and being mortal, and you talk about different people's concepts of courage and what courage actually means when you are becoming older and facing mortality.

Atul Gawande: So we normally think of courage as…it's this fascinating debate that I talk about, Plato describing Socrates having this discussion with generals around the concept of what courage is when they are trying to teach it to the youth of ancient Greece. And they come to the conclusion that they don't really know. The first question is whether courage is the willingness to fight against anything. But then they discuss the idea that there can be foolish courage…

Norman Swan: Stupidity.

Atul Gawande: Even stupid courage, and is that possible? And the dialogue ends without completely clarifying it. But when I read it what I came to was recognising that there was a kind of mix of prudence and wisdom that courage could represent. Courage was the concept of being willing to face the facts as they were, and that is courage in and of itself, and to have prudence in knowing how to manage that. And so when we talk about the end of life and knowing what's coming, courage is partly just the difficulty of recognising what you are actually up against. But then there's this added layer to it, which is a willingness to act, to take action in the face of that knowledge. You can still be paralysed by knowing what the truth is, can you act on it?

Norman Swan: And what you fear is not necessarily what you might have imagined earlier on in your life. So in other words, you talk about courage as being able to understand what you really fear, and what you hope for, and then, as you say, being able to act on that and understand it. And of course what you fear when you become older is not necessarily what you might imagine when you're 40 years old.

Atul Gawande: Right. For this book I headed up interviewing more than 200 people, 200 patients and their family members about their experiences with the infirmities of ageing, with terminal illness. And the striking thing is how rarely they mentioned that death was what they feared. Much more often they described the loss of certain things as being what they feared. It could be quite different from person to person, but some feared losing their mental capabilities more than anything else. Others feared losing their work or losing the chance to pursue something that was very important to them.

I describe a philosopher named Josiah Royce who said we all live for something larger than ourselves, that we are even willing to sacrifice our life for a greater cause. And he called that cause your loyalty. And different people have different loyalties. It might be their children that they would sacrifice themselves for, it might be their family, it might be their country, it might be an ideal like justice, it might be beauty, it might be God. And the fears that people have as they face infirmity is often really centrally tied up to what their loyalties are.

Norman Swan: But they still fear death. Many people still fear death itself, do they not?

Atul Gawande: Yes, absolutely, people have great anxiety about death. And being able to even discuss if you have a terminal condition and the doctor is sitting down with you and having to have that discussion, that this might be it, this is that conversation that starts with the doctor saying, 'I'm worried,' it is one that we…

Norman Swan: And if you're worried, by God, I should be.

Atul Gawande: Exactly. So of course we fear death. But it's as we face the losses that come with sickness or with frailty, we fear as much, if not more, what happens to us along the way.

Norman Swan: And you argue that the prospective changes and the variable is time, how much time you've got left, and your perspective on these questions changes with time.

Atul Gawande: I became very influenced by this researcher named Laura Carstensen from Stanford who is a psychologist who did these amazing studies where…and she's still doing them to this day…she started with people aged 18 to 94, several hundred people, and gave them a beeper, and has been following them now for more than 20 years and she will page them at random, out of the blue…

Norman Swan: What an annoying researcher.

Atul Gawande: Exactly, and you will suddenly get a page and it will tell you 'Record what your emotions are right now'.

Norman Swan: 'I'm really pissed off at you…'

Atul Gawande: Exactly, are you pissed off, are you happy, are you sad, are you frustrated, are you anxious? And one of the things she discovered is that as people age, their emotions change. The first surprise was that people as they get older, their health declines, their abilities decline, and they get happier. The average 75-year-old is happier than the average 35-year-old.

Norman Swan: And it's not because they become more stupid.

Atul Gawande: Anxiety levels are lower, depression levels are lower. Now, the puzzle then is why does it take so long? And the answer was thought to be, well, maybe you just need practice at learning to see things more calmly, that it just takes time, or maybe your brain changes. But in her study was a cohort of young predominantly men, she's from Stanford, this is northern California, it's the late 1980s, early 1990s, and they had HIV and many of them were failing their treatment and becoming terminally ill. And what was interesting was that there was a young signature and an old signature and they started to immediately shift to the older signature…

Norman Swan: If they had a life-limiting illness.

Atul Gawande: That's right, that once people became…well, and then a second thing happened in the study, was that the 9/11 bombings in New York happened. There was that moment when you really didn't know what was happening in the country, and everybody shifted to the older signature. She was measuring things like who do you want to spend time with at any given moment in time? Would you want to be with your sister or with the singer of your favourite song? And most young people really don't want to hang out with their sister or their mother or their father, they want to meet someone new they want to go out to a bar at night, shout at the top of their lungs to be heard…

Norman Swan: And meet a Kardashian.

Atul Gawande: That's right, all in the hope you might meet somebody knew. And what they all suddenly did is they didn't want to be at the bar when 9/11 happened, they wanted to be with their family, they want to be with that closer, tighter-knit group of people. And then three months later we all went back to being just the way we were. But what it showed, what she demonstrated is it's perspective that ultimately matters. If you are made aware of your own fragility, and an event like that can do it, or an illness can do that, you change, and your desires change, and interestingly your sense of purpose and your sense of even your emotions change in ways that can surprise you.

Norman Swan: So you've got this more centred cohort of people as we age, they are more centred, they are more family-oriented, what counts is what is closest to them because time is limited. And yet the medical profession hasn't really recognised that.

Atul Gawande: Yes, this was the thing that was the revelation for me. I had puzzled over my…for lack of a better word, my incompetence in dealing with unfixable situations. I'm a surgeon and there's nothing I love more than a problem I could fix, three hours in an operating room and I can make you better. But here were situations when I got into practice where I was never going to be the hero. You know, you'd have someone whose problems were really just the conditions of ageing and frailty or infirmity, or where the conditions of terminal illness. And the puzzle along the way was how to understand, how to even talk about these situations.

And what I gradually realised was that people have priorities besides living longer. And talking to experts who were really good at these situations, what they simply did was ask people the key questions which we don't ask in medicine; what matters to you besides just living longer? Our assumption is my job, my priority is your health and your survival. What could be more uncontroversial than that? But Carstensen's work and other people's work basically showed that well-being is not the same as being healthy and surviving, that in fact people are going to spend a large portion of their lives in modern life in a period where their health won't be as good as they want it to be, where they might be infirm, and yet are capable of great well-being. And the critical part is recognising that they have priorities besides just their health and living longer, and that you can provide support, even medical options, that help them achieve those things, even if they can't achieve immortality.

Norman Swan: Before we go on with that critique of modern medicine, let's come back to that courage thing. When you've interviewed people, when you've looked at the research, to what extent do older people acquire the courage to confront that imminent reality and be able to act on it, and to what extent is one of the roles of medicine, which we'll come to a little bit later, to help them do that?

Atul Gawande: Given that it's not a special quality of being old but a special quality of living under conditions of fragility that you start to recognise that there are things in life besides just yourself and your length of survival, that you start caring about certain priorities in your life besides just living longer, that doesn't mean that you are ready to make those choices. Denial is normal, anxiety about your own death and your own frailties is normal. And so one of the fundamental roles of medicine is to be able to help people be clear about what their priorities are and then help them achieve them.

One of the motivations for writing the book was my dad's own brain tumour. My dad was a surgeon, and he developed a tumour in his brain stem and spinal cord, became gradually quadriplegic. There was nothing he feared more than losing his surgical practice, and then it happened. And over time we had these conversations where I would ask…there are a few questions that palliative care physicians and hospice doctors and nurses were really good at asking and that I've gradually incorporated, and they were questions like; what's your understanding of where you are with your health at this time? What are your fears and worries for the future? What are your goals and priorities if time is short? What are you willing to sacrifice and not willing to sacrifice?

Norman Swan: And what did he say?

Atul Gawande: When I talked to him I told him the story of one of my colleagues whose father told her, 'You know, I willing to sacrifice a lot, as long as I can still eat chocolate ice cream and watch football on television.' It was like the best living will ever.

Norman Swan: And complete freedom from mad surgeons too.

Atul Gawande: So I said, you know, 'This is what her dad said,' to my dad, 'would that work for you?' He's like, 'No way football on television and chocolate ice cream is good enough for me.' Let him, living was interaction with other people, sitting at the dinner table with family or friends, enjoying some food, enjoying conversation, and if he could have that he would go through a lot to be able to have that. If you could have that just once a week he would go through a lot. And so that defined our whole path. He went through a radical operation to decompress his entire spine from the base of his skull to the middle part of his back, fused it all. He underwent radiation therapy. But then when chemotherapy, even high-dose steroids which was the start of his chemotherapy, took away his ability to really interact anymore, that was when he drew the line and he said, 'Stop, we're not going to keep going with this because it's taking away what's important to me.'

Norman Swan: And how ready were his physicians to do that? I mean, you've heard the story; why do you put screws in a coffin lid?

Atul Gawande: No.

Norman Swan: You haven't heard? To stop the oncologists giving another round of chemotherapy. And that's the oncologists laughing.

Atul Gawande: And as a surgeon, what week in your life is the most likely week you are going to have an operation?

Norman Swan: Your last week.

Atul Gawande: The last week of your life. Which is a week where you are clearly are getting all the harm and none of the benefit. So my father, as we sat down with his oncologist and I flew…I live in a different city, and I flew in to town for this appointment, and the oncologist sat down and laid out eight or nine different chemotherapy options, none of them with less than four syllables. You know, we had three doctors in the room, my father, my mother who's a paediatrician, and me, and we were confused by it. And what we wanted to get at was, first, how long would you really get more from any of these options, and what kind of quality of life? And you wouldn't get a straight answer.

Norman Swan: Because they didn't know.

Atul Gawande: Partly, and partly the intense discomfort that they felt in having that conversation. I first asked my dad, 'Is it all right if I ask a couple of questions about your prognosis?' And he said, 'Okay, ask.' So then I asked her, I said, 'What's the longest you've ever seen live with the condition that my father has at this point, without any therapy?' And she said, 'Three years.' 'What was the shortest?' 'Three months.' 'With the therapy, what's the longest?' 'Oh, it's still three years. But you might get a better chance of getting closer to three years.' Well, my dad had no idea that three years was as long as she was imagining.

Norman Swan: He thought it was going to be longer than that.

Atul Gawande: We were all thinking a decade, 15 years, this would be really slow-growing. In fact it would prove to be about 18 months, less than 18 months from that point before he would die. And that was incredibly important. He had things he wanted to do, things he wanted to get in order, and he had a certain way he wanted to live his life. And so at that point he started to give certain things a try, but then when it was clear it was taking away the quality of life he had, he went on to hospice. He ultimately had four months on hospice…

Norman Swan: Which is what we call palliative care, so at home.

Atul Gawande: At home, not taking chemotherapy, focused on how to have the best possible day each day that he could. And he got to live those four months as a person and not a patient.

Norman Swan: You're listening to a Health Report special here on RN, coming to you from the Sydney Opera House at the 2015 Sydney Writers Festival.

I'm Norman Swan and I'm in conversation with writer and surgeon Atul Gawande whose most recent book is Being Mortal.

People think of palliative care as only being for the last few days of life, when Australian research has shown that people given palliative care earlier on, can actually live longer in better health. Something oncologists often forget.

Atul Gawande: Being a surgical oncologist it's always dangerous territory for me to shoot at both my surgical profession and the oncologists I work with…

Norman Swan: But go on, nobody is listening!

Atul Gawande: But what we see is that…and it has been a fascinating set of research now for the last decade, that when you have people who simply have a conversation about what their priorities are, usually a palliative care physician having that conversation, they are more likely to then later on decide they are not going to take their third or fourth round of chemotherapy or go for that last-ditch surgical procedure. Those people have fewer days in the hospital, they receive less chemotherapy. In lung cancer trials, for example, those patients and up on twice as much time at home on hospice, they are less likely to die in the hospital, and they live 25% longer. If you could package asking those key questions early on, as a drug it would be a multibillion dollar blockbuster.

Norman Swan: Because it extends life in high quality. But doctors and patients share a delusion, we overestimate the benefits we are going to get from treatment and underestimate the harms, and it's a systematic thing that we both do.

Atul Gawande: Yes, and this is part of what makes it hard. When the crisis comes, it always comes as a surprise, and it's a surprise not only to the patient, it's often a surprise to the doctor because we've bought in with the same optimism that we all have. I describe the case of a patient whose care I regret, a young woman, she was 34 years old, she was pregnant with her first child and she was diagnosed with stage four lung cancer in her eighth month of pregnancy. We rushed her to get an early delivery and start her on chemotherapy, and then in the course of chemotherapy it turned out she had a second cancer, a metastatic thyroid cancer which is the kind of cancer that I treat. The lung cancer was going to limit her life, and I still was having to sit down and talk to her about the thyroid cancer. The best thing to do would have been not to operate on the cancer, but I had a hard time saying that to her.

Norman Swan: You didn't know how.

Atul Gawande: I didn't know how. I didn't want to say, well, the lung cancer is going to kill you, so we shouldn't even bother operating on this. How do you say that? And she's the picture of life with her baby in the office there with me and her husband, you know, hopeful, 'We hear this cancer is at least one that…that this one we can cure.' And what we vowed as a team…we did have some frank discussions that if it came to the end, that she would be home with her baby and that we wouldn't just torture her all the way to the end.

Well, come nine months later she was on an experimental trial, we had put her through whole-brain radiation, we'd signed up for a second drug starting on Monday, and on Friday she couldn't breathe any longer, and by Saturday she had died.

Norman Swan: So her last days were terrible.

Atul Gawande: And her last days were…her last couple of months she was so weakened she could hold her baby, her last days were in the hospital, not with that chance that we had all voiced that we wanted to be at, and it was because we all got there and it is still somehow a surprise. Even when she was in the wheelchair coming to my appointments, still believed that maybe this will pull through.

Norman Swan: Because you want to be an optimist and you wanted hope.

Atul Gawande: And on some level people are always looking to us to be the optimist. You believe your job…

Norman Swan: You're going to be the one in 100,000 who makes it.

Atul Gawande: Exactly. But I think what I gradually discovered my job is, it's to do two things, encapsulated in a very basic idea; hope for the best and prepare for the worst. Hope is not a plan. So we should hope for all the best, we should begin to try what we can. But we also should be asking along the way; what are you willing to sacrifice and what are you not willing to sacrifice? What are your priorities besides living longer, and let's make sure we don't sacrifice those. And it would have been possible along the way to have done that.

Norman Swan: But the medical profession are not good at autonomy. We are taught in medical school that autonomy is one of the core features of ethical practice, but we don't respect it.

Atul Gawande: So it's a complicated idea. The traditional idea of the doctor, go back to the 1950s, is doctor knows best. If you have a red pill or a blue pill that you can have, in the doctor knows best version, the paternalistic ideal, they would just tell you, 'Take the blue pill, this is what you get.' You wouldn't even tell them about the red pill, you may not even tell them what the diagnosis they have.

Norman Swan: Certainly not if they've got cancer.

Atul Gawande: Right. In more recent times, now we are almost moving to what I call the retail mode. 'Well, there is a red pill and there's a blue pill and here are the pros and cons of this pill and here are the pros and cons of that pill, what do you want?' And then when people say, 'Well, which one would you take, Doctor?' You are literally taught to say, 'You know what, that's not really for me to say. It's really up to you and only you really know what is more important to you,' and that kind of thing. And people feel very abandoned in that situation.

And the third mode, which I think is the one we are trying to gravitate towards, is the counsellor mode, where I can understand enough about you, where I can ask the questions and understand enough to know what are your priorities, what matters most to you. And then we can discuss here's the red pill and the blue pill and this is why I think the blue pill is going to help you achieve that most.

So for my father, who was willing to go through a lot of pain in order to be at that dinner table, there were certain therapies that were clearly the ones that were going to be the best shot at being able to stay there. And then when that got taken away, we switched to the other pill, which was just to control his pain. If he couldn't really interact on a regular basis, he didn't care if he was going to be knocked out 18 hours a day, just control his pain. That was very hard for sometimes the doctors to go along with, and it was hard for my mother, but that was what he wanted.

Norman Swan: And of course the worst thing that can happen in many situations is that you end up back in hospital where they don't know what to do, they don't know how to ask the questions, they don't know how to talk to patients like this.

Atul Gawande: And this happened. So my father, a surgeon in a small town in Ohio, arrives at his own hospital because my mother…you know, one of those painful episodes that you write about because I'm a writer but my mother at this point doesn't necessarily like that I'm a writer because what I describe is that my father had committed that he did not want to be resuscitated once he stopped breathing, but she couldn't take it and called the ambulance service. And so they came, they took him and they resuscitated him, he woke up in the hospital, and he was pissed. He's like, 'I thought we had a deal and I had come to the end.' And the way they resuscitated him was by giving a drug called Narcan to reverse his narcotics. And so he was alert and in tremendous pain.

Norman Swan: Because it reversed the painkilling as well.

Atul Gawande: And in his own hospital his colleagues would not give him back his pain medication.

Norman Swan: Because they were frightened of killing him.

Atul Gawande: Because they were worried he would stop breathing again. And he was so mad, he had me sign him out of the hospital in the middle of the night, just so he could get the pain medicine. You know, they would give him a little…'Let's give him a quarter dose of the medication.' He was just in pain all night, and that was exactly what he wanted to avoid, and he finally signed himself out of the hospital and we got him home and gave him what he needed.

Norman Swan: So one of the things (and you talk about this in the book) that detracts from being willing to give people the autonomy they deserve is a sense of risk. We want people to be safe. And you talk about this in relation to aged care, moving away from the frankly medical situation.

Atul Gawande: Yes, this surprised me as I was writing the book. I did not expect to spend two-thirds of the book writing about the situation of people who were not terminally ill but just ageing, dealing with frailties and loss. And it came out of realising that if we are not asking people what their priorities are besides just living longer in the very last few weeks of life, we are not asking the last few years of life at the point where you need to help. We will all likely come to this place where we have a hard time living alone and need services or need to be even in a nursing home. And the striking thing is that nursing homes look more and more like hospitals. They are built around a nursing station, the rules are all around safety. And safety is assumed to be the most important thing that you would want for your ageing parent.

Norman Swan: Thou shalt not fall.

Atul Gawande: Exactly, thou shalt not fall, which means we don't even want you to take the chance, you're just going to be in a wheelchair. And/or thou shalt not have a drink of whiskey at the end of the day, or you may be…I describe meeting an 85-year-old patient with Alzheimer's disease made to take a pureed diet by their physician because there is a risk of choking, and she is hoarding cookies. I was talking about this at a White House meeting, and then one of the senior White House staffers pulled me aside and said that he had been sneaking bananas into his mother in her nursing home against medical orders. Just give them the damn banana. People have things that they care for in their life.

Laura Carstensen describes people getting happier as they age, having lower anxiety, less depression. The exception to that is when they become institutionalised, and they feel like they are in prison. And the most common complaint, what you hear them say over and over is, 'When do I get to go home?' And you realise, what is home? And home is ultimately a place where you get to make the choices, where you get to make the choices about the risks you want to take.

And a nursing home director said it to me very poignantly, she said, you know what, the children of the adult parents, of the aged parents, are the ones who actually decide which place they are going to choose, and they invariably want to know; is it safe for my mother here? And they want to look at the safety ratings. They don't ask whether they'd be lonely here or whether they have real choices. And they said, safety is what we want for those we love, and autonomy is what we want for ourselves.

I describe visiting some radically redesigned places. They are built not around a nursing station but around a kitchen. And in the kitchen is a refrigerator, and in the refrigerator you can go and take food any time you want. And that's a radical concept in nursing homes. You mean, you could let a diabetic go take a soda? Yes. That's what a home is. You get to make bad choices. But that's a very difficult concept in these settings, but I describe places where those kind of choices are allowed.

And the other thing, I describe my wife's grandmother dying in a nursing home. In the last two years of her life she was miserable because these choices were taken away. She would be required to have a roommate that she had no choice over. How can you expect someone to have a life that they consider being full of purpose and things they care about, and we don't care at all about who you would live with. It's just fundamentally disrespectful.

Norman Swan: Atul Gawande's latest book is called Being Mortal. He was talking to me at the Sydney Opera House as part of the Sydney Writers' Festival. Next week here on the Health Report, Atul speaks more on what should be the role of medicine in the 21st century and how to make healthcare safer and more affordable. I'm Norman Swan and I'll see you then.